ceremonially presented a check for $ 5 million in additional funding for IPRD from the state of Florida – a follow-up to the $ 1 million funding in 2023 to launch the institute – and researchers from UMass Chan Medical School, Harvard, the National Institutes of Health, Stanford University, the University of Miami and the University of Florida made presentations.
His enthusiasm for joining IPRD was piqued by the support from university and legislative leaders.
“ With a shared mission and commitment to improving and increasing clinical care, research and education for pediatric rare disease … every medical geneticist in the United States and the world, both the physicians trained as clinical geneticists, the clinical laboratory geneticists like myself and the genetic counselors, all would love to be part of that comprehensive mission,” Ledbetter said.
He went on to add that over the course of his 40-year career, transformational advances in genomics have moved rare disease diagnosis from“ science fiction to possible treatments and cures.”
The search for diagnostic answers to the rarest of diseases has not slowed.
In April, Bhide issued a campus-wide Call for Research Proposals, which will be funded by IPRD money set aside from
the initial state funds. The institute will entertain proposals that address an aspect of pediatric rare disease, including but not limited to etiology and disease progression, pathology, and technologies for prevention, diagnosis or treatment.
“ We expect responses from multiple FSU colleges,” said Bhide, who has heard from – beyond the College of Medicine – the colleges of nursing, arts and sciences, engineering and others.“ We anticipate receiving 30-35 applications requesting support for new projects, as well as the continuation of some currently funded projects.”
College of Medicine Dean Alma Littles, M. D., was equal parts grateful for the opportunity to bring awareness to rare diseases and excited about what the future holds for the IPRD.
“ Let us remember that awareness is just the beginning. The real impact comes from action,” Littles told the Rare Disease Day crowd in February.“ Together, we have the ability to transform the future of rare disease diagnosis, treatment and care.
“ Together, we can ensure that families no longer feel isolated and forgotten. And together, we can build a future where every child – no matter how rare their condition – has access to the best possible care and the brightest possible future.”
Unlocking the Secrets to Healthy Aging
People are living longer and may spend as much as a third of their lifetime identified as an older adult, someone 65 years of age and older.
24 FSUMED | MED. FSU. EDU